My cardiologist has recommended open heart surgery to repair Atrial Septal Defect found at Transosophegal Echocardiogram. I am terrified and refused but he said to speak to surgeon which is booked on Friday. Also cancelled pre op angiogram. GCA/PMR since February, 40 mg prednisone. Now down to nearly 11.25 using slow method on this forum but struggling with this dose. GP wants me at 5 mg by now.
Your GP is a prat (sorry, I'm feeling direct tonight!). You can mange on what dose you can manage on. Trying to rush it will just bring back the PMR symptoms and you'll be worse off than ever and need a higher dose again. Try a different member of the practice maybe?
If your cardiologist has recommended surgery don't reject it out of hand. Talk to the surgeon first and get the low down. You know, coronary bypass counts as open heart surgery and had become routine prior to the development of stents. It is still necessary when the stents fail so hasn't disappeared altogether.
A good experienced surgeon is what counts. Ask about their record. Ask about risks. How they will do it - sometimes it is done like inserting a stent, sometimes with full traditional surgery.
The problems from the septal defect may be making the PMR worse. It has longterm implications too. Do talk to the surgeon who I'm sure will put your mind at rest. And don't reduce any further until you have spoken to the surgeon. Many don't mind operating on a patient on pred - they just take more care in monitoring you.
I think the surgeon is the best in minimally invasive surgery and am seeing one of his 'team' apparently. I don't think this option is open to me as defect is too large and inaccessable. What dose of prednisone is safe for this surgery, do you know? GP and others at the practice are not accessible to me.
Hi, Trust your Consultant and Anaethatist, I too had surgery, not heart surgery but a big operation for my age of 67, and my fitness levels or should I say unfitness levels, I have been taking steroids constantly since January '01. My consultant and Anaethatist fully understood my concerns and put my mind at rest, I was also given an appointment with my Rheumatolagist 1 week before surgery. In 13 years I have been up and down the steroid lots of time but since stumbling upon this Forum about a Month ago I have learnt such a lot. I know more about PMR now than I ever have, many thanks to everyone who had written a message on here in the last month it has helped me enormously x x
Thank you for your reply. This forum has been a lifeline for me too.13 years is a long time on steroids and i feel relieved by your story.
I think you are spot on with your comment about my GP! Her only saving grace is the initial diagnosis and prescription of prednisone. Since then she has no interest! No referral no appointments - nothing!
Hello again, 13 years is a long time I was told I would be on steroids for life, I'm now down to 3,2,and 2 I shall stay on this for 2 months and reduce to 2, 2 and 2mg per day and see how I get on. Don't worry about your surgery you will be fine. You must have it done, the surgeon knows what he/she is doing, and they wouldn't say have it done because they have nothing else to do that day. Trust them and tell them your fears, they have seen it all before and they will understand, Take Care
Lol, have just noticed I've put 2, 2 and 2 daily, I meant 2 mg daily, That was a senior moment if ever I saw one
If her best offering is to tell you to get to a lower dose without thinking of the consequences then you are probably better off without seeing her! Find another - because the one thing you do need is the occasional blood test! OTOH, your cardiology team will monitor you well and I think Margaret has said it all. They don't just offer to do operations out of boredom or to make money (something that has been shown in other healthcare systems) - in the NHS such things are done on need.
Thank you Eileen and Margaret. Your comments have spurred me into action! I went to the surgery yesterday and confronted the receptionist, demanding an appointment before Friday.I was in tears! Got to see GP for 45 minutes and achieved the impossible! A blood test today -FBC/ESR, a prescription for prednisone in 1 mg tablets (I can stop stressing about chopping up pills!),a letter from her to my cardiologist and request for an appointment to see the anaesthetist so I can discuss the drug picture - particularly prednisone in surgery. And finally an appointment booked for 30 September with a Rheumatologist!!!
RESULT!!!!! Funny how things happen when you stop being passive!
Eileen, have you seen this post, it appears to be talking to you!
https://patient.info/forums/discuss/was-doing-great-till-reducing-to-2-mg-help--272854
Done - I was writing my response when you posted! I'm notified by email of every PMR/GCA post now the site is working properly. I did miss a few when they were messing about with it but if I don't appear to have seen it it is most likely I just haven't got to it yet! I get about 12-15 emails every morning to work through on two forums - you all stay up after I've gone to bed! We're anhour ahead of the UK and I'm not renowned for being a night owl. Not a morning person either come to that - so we'll blame both on PMR ;-)
Thank you margaret. I have been described as a ticking time bomb heartwise and am fully aware i need the operation. But I also need to trust that my cardiologist/surgeon/anaesthetist are aware of the vasculitis/steroids and act accordingly with that in mind. So far they have ignored my concerns.Tomorrow, with any luck,the surgeon will put my mind at ease.
Hi Ya, You have been in my thoughts a lot, so glad you have faced your surgery head on, don't forget that even in the anaesthetic room you can say to the Anaethatist "you do know I'm on steroids etc don't you" and you will be reassured again. ( that's what I did anyway ) you will be fine, please let me know how you get on, and by then you will be feeling so, so much more at ease, you are in my thoughts, Take Care x x
Thank you so much for replying. I have a vocal problem which is worse when stressed - then I cannot be heard! Hence my panic as I cannot always get my point across. I need to be listened to when I can speak - or if! ENT will sort it but not with dicky heart!
Sorry, but at my last appointment I wrote down my concerns and consultant didn't read it - just gave it back. So frustating!
I would have handed it back to him and waited until he read it. At the top of the page put why you have done it in very large print - and even pull the "disability" card if it helps. I used the "colleagues" card even though it is something that seriously enrages me - being seen by a GP wearing a white coat and hospital ID changed his attitude from downright rude at one appointment to something far more acceptable 2 weeks later. It's disgusting but if it works - that's fine.
Thank you Eileen. My emotions are less in control since starting prednisone! This is such a difficult journey for all of us but it is lovely to have support from like minded people having similar battles.
Hi, I am so sorry, No One has the right to treat a fellow human being so badly, is there someone who would go with you, to fight your corner as it were. Some people can be so arrogant, speak to a nurse before you see him and she is there to fight your corner if you have no one to be with you. Love Margaret